Archive for January, 2010

Recording Day 2


Amy was able to come to the studio. The school she teaches at is close to Wild Sound.



It is finished.  We had another great day yesterday.  It wasn’t until we got home yesterday that I felt exhausted, but we are so very happy.  I want to tell you that there were so many miracles that came together for this CD.  I was so sick all month and it didn’t seem possible, but the day before the studio time I started to feel better.  There were many great things said and done while we were in the studio.  We had so much love and support from many friends.  The team that helped my music sound amazing was respectful and kind and thoughtful to me. 

If I could share one word, it would be hope.  It is what I feel, but I think, most of all, the people who have been involved in helping my music be heard feel hope too.  I am not any more amazing than the next person.  I did what I was asked to do.  I didn’t know when I started to compose with Karen ten years ago that my life would change dramatically.  I said yes to God and He has done the rest.  I would never have allowed myself to dream this big.  I could not have made this happen.  My mom and family could not have made this happen.  But because I said yes, this world is changing. 

I hope it changes most of all for girls with Rett Syndrome.  We need to be seen as human beings who have capabilities, who have thoughts, who have hopes and dreams.  We are more than people who create great struggles for our families.  We are more than people who cost society money.  We are here to contribute in our own unique ways to this world.  I know that every person was created with something special and unique to them, but it’s only when we have the right support around us that these gifts can be shared.  Part of our struggle is being believed at all.  I get so sad for the girls who listen to their families speak of their disorder as devastating and awful and use words like suffering.  If that’s how we are seen by others, it’s hard to live a bigger life.

 Please check out a story that a reporter wrote about me in our local paper:

 I want to thank her here for making some changes to the story at my request.  One of them was she said that I suffered from Rett Syndrome.  I told her I live with Rett Syndrome.  I choose not to suffer.  I am who I am and I can’t change Rett Syndrome, but I choose to live.  I choose life every day even when I am sick like I have been most of this month.  I am glad for life.  While I am here I will do whatever I can to help others become more aware.  The girls with Rett Syndrome live the lives they are allowed by others to live.  It isn’t the life we would have chosen, but many wonderful things happened in my life and I am so very happy for them. 


Leah read two poems that I wrote for my CD. Everyone cried

During the first poem reading.

Thanks to my family and my wonderful sister Leah I have been given a new voice in this world through my music.  I have not been an easy sibling to live with for Leah when she was young, so to have her involved in helping this dream of my music getting recorded come true is beyond words.  I love her so very much.  I couldn’t have done it without her.  She is so selfless.  Her viola makes my music sound the way I want it to.  I know you will love it.  I send you peace. 

Leah helped them understand exactly what I wanted. I watched the recording on the monitor. I could hear everything.

Love, Karly

Greg made my music come alive

Leah going over the music before we left for the studio

Barbara McAfee and Karen Bohnert have made my heart very content.

Barbara and I look alike!

I was in the studio during reherasal to make sure my songs were played exactly as I wanted them.

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CD Recording-Day 1


It is a cold and sunny day. It took about an hour to get to Wild Sound Studio.

It was wonderful.  I couldn’t even hear the mistakes for the first hour because I was so happy.  This was the first time my music was played by professionals.  There were lots of tears in people’s eyes.  It was warm and inviting in the studio.  There was honor and respect and love.  I had so much joy.  Gregg and Leah are sleeping.  We are tired but happy.  We are going to listen to the CD Matthew sent home with us today before I go to bed.  There were six songs recorded today with one of my poems.  My Mom cried.

  I am content.

Love, Karly

My Mom was at my side all day so I could give my opinion with my keyboard

Matthew owns the studio and was wonderful to me. Greg was my piano player. He made me feel so alive. Barbara is a true friend. She sees me.

I got to go into the studio when they were practicing. I feel so loved by Leah. She added so much beauty to my songs.

Karen was there. She helped them know exactly what she felt I wanted. She was with me every note of every song while I composed.

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It is a Great Day

It’s a great day!  The sun is shining, Beau is eating hay in the snowy paddock.  I slept great.  Leah is here.  I feel good.  Gregg, Leah, Mom and I will be leaving for the studio at 10A. 

Today is the day I will be getting a different voice in this world.  I am excited for the musicians who will be playing my music to perform it for me.  It is such an amazing event in my life.  I am a silent person, but to have the music I have in my heart be finally heard by others in a beautiful way is so life changing for me.  I don’t know what is going to take place this year, but I am confident that it will be wonderful.  Thanks to everyone who has sent me supportive messages and phone calls.  I am still recovering but I feel much better.  I haven’t had a lot of energy to talk and email, but today I feel good.

I will let you know how it went later.

Love, Karly

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Music-It’s What Makes me Feel Alive

1989 - Leah was always so patient with me.

I feel great today. My head and my heart are content. I don’t have stomach pain. I am so happy because Leah will be home at 2 today.  My Mom is picking her up at the airport.  This is the first time that either of us have done a professional recording.  Leah plays viola in a professional orchestra and a couple different bands, but this is the first time we will be doing a recording together. It is something I never imagined could happen to me. To have Leah with me is a thrill. I would sit and watch her play for years and feel so much grief that I could not make music. It sounded so different when she played. To have songs now that sound beautiful not only to me but to others, that I have composed, is a dream come true. People believe in music. They believe because they are not looking to see if I am intelligent, but their hearts and their ears tell them something their head could not. I have so much joy today. I feel content, because even if only my family and friends were to hear my songs and have it help them see me in a new way, I would be content.  But to have people I will never meet here on earth be affected by the songs that God gave, me makes the struggles in my life feel less today.

There will be pictures. There will be songs. There will be love. I am amazed.

Love, Karly

We still have this piano-1988

Girl's with Rett seem to enjoy music. It has made a huge difference in my life. 1987

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My CD is Almost Here

I am sitting quietly today looking at the sun out my living room window.  I have so many great things happening in my life.  I feel so fortunate and yet the past month has been very hard because I am not healthy. It has been difficult because no one seems to have good answers, but I don’t want to focus on that today because I am so excited about what is happening with my CD.  I have had my photo shoot for my CD cover.  I got a new hairstyle.  Leah is coming home tomorrow and we are going to the studio on Thursday and Friday.  I am saving my strength, so I can be there and help make sure everything sounds the way I originally heard it in my head.  So far, I am so happy with the things that are going on.  I feel so fortunate. 

 Here are some photos.

At the hair salon

Brynn was very fast and kind to me.

The Studio was in Wisconsin so we crossed over the Bridge.

Jeff Dunn is very talented. He made me feel so comfortable

I was so content. Jeff asked me questions while he took hundreds of photos.

I saw some of the photos before we left. I liked this one.

Love, Karly

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CD Time-Please Help Me

I have a very big week coming up and I have not been feeling good for a long time, so I am going to ask you to help me by praying for me.  It is next week that my sister is coming from Ohio and we are going to be recording my music in the studio on Thursday and Friday.  I was suppose to have my photo taken in a studio this week for a CD cover, but I had seizures on two days so I was not able to go. I was exhausted.  It is unusual for me to feel this bad for so long.  I have a fever and so far the doctors have not helped me at all.  I want to get better so I can be involved in the studio because the songs are the ones I composed and it is my input that is important to make sure they sound exactly right.  I am excited and I have been waiting for this week for a long time. 

 Here are some pictures my Mom found of my sister and me when I was much younger.  I have always played around the piano.  It has been part of my life since I was born. 

I loved this keyboard

I sat in front of her until I was too tall for her to play with me on her lap.

I would sit next to Leah while she played. I wanted to play like she did.

Here is what I wrote to put on my CD cover.

I have lived for 24 years with a rare and often misunderstood disorder called Rett Syndrome.  For most of us living with this disorder there is little chance to share who we are.  Most of us cannot speak to share what we are thinking, let alone demonstrate that we have intellect.  Our bodies are often very difficult to live in because of the effects of our disorder.  But I don’t want to have you focus on what we cannot do; I want to have you believe in us for who we are as people.  I am able to communicate, unlike many of my friends all over the world with Rett Syndrome, who are not able to freely express their needs and dreams.  Because of this I am able to tell you that there is far more intelligence in each one of us than you can see.  We are eager for you to see our gifts and talents and give us opportunities to express who we are.

 When I was born, my Mom played piano everyday.  She would hold me on her lap in front of the keyboard and play. I loved how it sounded, and tried for many years to reach my hand towards the keys, but it was so frustrating for me because my hands weren’t able to play. 

 I was fifteen years old when my music therapist, Karen, was inspired to see if I had songs held inside of me that needed to be shared.  She found a way for me to communicate my songs so she could write them down.  It is because of her persistence and hundreds of hours of us working together that these songs have come to your hearing.  I am so glad for her belief in me and my talents and the hours we worked without a lot of accomplishment.  She gave me a voice that others can hear, because she felt that my songs were meant to be heard. .  To have my music performed by someone whose hands are not challenged to play the correct notes, has changed my voice in this world.

 I hope that when you listen to my music you believe in girls with Rett Syndrome and their hidden gifts and talents.  We are waiting to be seen and heard and have our own unique voices in this world.  For my friends who have very high physical needs but are without an audible voice, I gift this music to you.  We live our days on earth in silence, but I want you to know, that I believe each person has great value and with the right people to surround us, our lives will be seen as the light that they are in this dark world.  Thanks for hearing what I have to say through my songs. 

Love, Karly

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Message from Susan Norwell

I asked Susan Norwell if she would be willing to write something for me to put on my blogpage.  She has worked for many years with people who are challenged with communication.  I had a great visit with her last Fall.  She and I have written to each other by email since then.  I am excited that she believes in Rett girls.  We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.

I have been very sick this past week, so I am not able to write more, but I wanted to share this with you.

Love, Karly

Dear Karly Bloggers,

I have been working with girls/women with Rett for almost 30 years.  They have all taught me so much, that I wish I could go back and help those first two babies I worked with in 1980.  I would have a lot more to offer them now.  What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about.  Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.

I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development.  So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her. 

For years I have utilized Facilitated Communication with my students with autism.  I was trained by the original Biklen, Syracuse crew back in the early 90’s.  I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices.  I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved.  I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!

Karly communicated via a keyboard facilitated by her mom.  She was able to answer my questions and make appropriate comments throughout our visit.  Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder.  Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech.  This is again something I have noticed with other students who use FC.  They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.   

Karly is very blessed to have a mom that believes in her and others who support her communication and creation.  There are so many girls who are not this fortunate and are still trapped by others’ low expectations.  Please don’t leave any method, style or type of communication untried. We owe it to our “girls.” 

Susan Norwell M.A.

Educational Specialist (Rett, Autism)

When Susan Norwell visited me at my house

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